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首页> 美国卫生研究院文献>Journal of Oncology >Conducting Molecular Epidemiological Research in the Age of HIPAA: A Multi-Institutional Case-Control Study of Breast Cancer in African-American and European-American Women
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Conducting Molecular Epidemiological Research in the Age of HIPAA: A Multi-Institutional Case-Control Study of Breast Cancer in African-American and European-American Women

机译：在HIPAA时代进行分子流行病学研究：非洲裔美国人和欧美妇女乳腺癌的多机构病例对照研究

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Breast cancer in African-American (AA) women occurs at an earlier age than in European-American (EA) women and is more likely to have aggressive features associated with poorer prognosis, such as high-grade and negative estrogen receptor (ER) status. The mechanisms underlying these differences are unknown. To address this, we conducted a case-control study to evaluate risk factors for high-grade ER- disease in both AA and EA women. With the onset of the Health Insurance Portability and Accountability Act of 1996, creative measures were needed to adapt case ascertainment and contact procedures to this new environment of patient privacy. In this paper, we report on our approach to establishing a multicenter study of breast cancer in New York and New Jersey, provide preliminary distributions of demographic and pathologic characteristics among case and control participants by race, and contrast participation rates by approaches to case ascertainment, with discussion of strengths and weaknesses.
机译：非裔美国人（AA）妇女的乳腺癌发病年龄比欧洲裔美国人（EA）妇女的乳腺癌发作早，并且更有可能具有与不良预后相关的侵袭性特征，例如高级别和阴性雌激素受体（ER）状态。这些差异的潜在机制尚不清楚。为了解决这个问题，我们进行了一项病例对照研究，以评估AA和EA妇女中高度ER疾病的危险因素。随着1996年《健康保险携带与责任法案》的实施，需要采取创造性的措施，以使病例确定和联系程序适应这种新的患者隐私环境。在本文中，我们报告了在纽约和新泽西州建立乳腺癌多中心研究的方法，按种族提供了病例和对照参与者之间人口统计学和病理学特征的初步分布，并通过病例确定方法对比了参与率，讨论优点和缺点。

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